With EoE, Allergies, Asthma and a G-Tube

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went.

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. I recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room.

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom. It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Our family

I’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

Dealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.